Autism Around Alberta
 May 2021 Edition

In Memory of Deborah Barrett

It is with great sorrow that we share the news of Deborah Barrett’s passing on April 20th, 2021.

As President of Autism Society Alberta, I have the task of trying to convey what Deborah meant to our community and to myself. It is a difficult task, and one that I take very seriously. Deborah’s passing leaves a chasm in our community efforts on topics such as Who Will Take Care of Our Kids and employment for those with disabilities. She was a great activist in our community. She was a resource whose departure will impact the effectiveness of our efforts for many years.

It is sad that you often kick yourself after a loss, telling yourself “I wish I told them what they meant to me and our community while they were alive”. I feel I missed the opportunity to truly tell Deb this personally, so I am choosing to do the next best thing I can think of and tell anyone else that will listen. I was first introduced to Deborah about eight years ago, when I was looking to build service offerings for children with disabilities. Within 24 hours of meeting Deborah, she had a dental emergency, and asked me to make a speech and accept a large donation for Autism Society Alberta at a dinner event. In the years that followed, she always provided me with great advice and even greater mentoring, which helped me to eventually realize the importance of the words in that first speech.

It was not only her passion that I had such respect for, but her ability to implement and execute. To be able to deliver in a practical manner on a topic one is passionate about is a gift that very few possess, as not many people's skills and passions are fully aligned. Along with her PhD in Psychology, Deborah also had many skills that drove her passion to places most would not be able to take them. Deborah encouraged me to join the board of Autism Society Alberta many years ago, after she was instrumental in bringing our society back to life. A few years later, she asked me to be President of this organization that she had led into a thriving organization with fantastic and eager volunteers. And from there, we have since hired a number of staff and provide an excellent service which touches the lives of many Albertans.

I only hope that we can continue to honour her legacy, skills, and passion, and continue the work that was very personal for her. I encourage everyone to click on the below link and read the messages celebrating the life of my friend Deborah.
 

Jason Scheyen, President, Autism Society Alberta
 

Click here to read Deborah Barrett's obituary

“Dr. Deborah Barrett has left such a deep and impactful legacy. I will always remember Deborah's amazing leadership in creating opportunities for autistic youth and adults, and in breaking down barriers facing the autism community: whether it was her work in Act Now for Autism, a group committed to opportunities for adults on the spectrum, or her visionary leadership at both Autism Edmonton and Autism Society Alberta. Or Anthony at Your Service, in which Deborah truly walked the talk in creating sustained jobs for a very wonderful team of hard workers who, for some, had previously lacked the opportunity to thrive in the workplace. Deborah had the art of reaching toward new vistas of what is possible – in making this world a more welcoming place for all. She will be deeply missed, yet her legacy lives on and on. There is no doubt that the world is a better place because of the presence and impact of Dr. Deborah Barrett.”

Dr. David Nicholas
 

“There are so many Autistic people, parents and people who work in the autism field who were inspired by Deborah’s insights, leadership and passion, in her professional work, roles with Autism Edmonton and Autism Alberta, and her loving support and endless dedication to her son Anthony, including the innovative creation of Anthony at Your Service delivery services. Working with Deborah meant being challenged to think more deeply, push harder against the status quo, and ensure that the urgent needs of Autistic people and families were always front and centre. Deborah held us all to a higher standard and led by example. Deep condolences to her devoted husband David Jardine (a true partner in Deborah’s advocacy work), her children Jessica and Anthony, and a remarkable circle of family, friends and community members whose lives she enriched over the years.”

Dr. Lonnie Zwaigenbaum

“Deborah was one of my heroes! Such a brilliant woman and friend who led the way and shared her dedication to making the world a much better place for those with differing abilities. Her wisdom, her leadership, her commitment to the Autism Societies, the community and her family set an exemplary example for all of us on this journey. Her leadership, empathy, and kindness will forever be missed.”

Kim Fox

“During the 16 years that I knew Deborah, I never stopped being amazed by her tireless commitment to creating better lives for people with autism and developmental disabilities. One of the many ways she did this was through the incredible amounts of time, effort and talent that she put into building and strengthening organizations that shared her goal. Through our work together and our friendship, I got to see firsthand how committed she was to making Autism Alberta a real provincial voice for the autism community, and how hard she worked to create livelihoods and opportunities for as many people as possible through Anthony At Your Service. I was so fortunate to have her as a warm-hearted mentor, an incredibly talented collaborator, and a trusted friend.”

Roman Sokolowski

 

“Deborah's compassion, strength and dedication shone through all that she did for her family, and the autism community. She especially thought ahead to what support our adult children would need in the future. There were times over the years that we served on ASA's board that I personally needed advice about my own autistic son. She not only gave me comfort and ideas, but connected me to an excellent professional who actually figured out Eric's second diagnosis. She even talked to me about an opportunity for Eric with Anthony At Your Service. I miss her strong, caring presence, her quiet humour, and steadfast guidance to our community.”

Kitty Parlby
 

“We first met Deborah Barret in the years our youngest children were born and we were beginning to adjust to a most unexpected journey as parents. Soon after this introduction, we both developed a deep admiration and respect for Deborah. Deb’s love for her family, her focus on the value and humanity of our loved ones on the spectrum, and her desire to bring meaning and purpose to the lives of those in our community was contagious. Her contributions to the community have been remarkable. She served as a mentor to us and to countless others, both as a parent and a leader of change. While Deb’s passing has left us with great sorrow, Paula and I were blessed to have known Deb and feel comfort in the enduring friendship we shared.”

Lyndon Parakin & Paula Swift

 

In honour of Deborah’s passion for the autism community, Autism Society Alberta has created a bursary in her name to ensure her legacy and her work with Who Will Take Care of Our Kids lives on. Click here to donate to it.
 

In This Issue

• Autism Alberta's Family Resource Centres
• The Many Faces of Therapy and Counseling in Alberta – Kitty Parlby
• Remembering the Importance of Medication Firsthand– Hope Rudics
• What Are the Criteria for an ASD Diagnosis? – Nicole Burnett
• Emotions 101: Understanding and Managing Your Emotions
• Teaching High School Students with Autism Online – Myles Bingham
• Estate Planning Series: Part 3 – Qualified Disability Trusts – Nicole Wiebe
• Our Virtual Village – Karla Power
• Supporting Learning, Interaction, and Interests through Reading – Maureen Bennie

Autism Alberta's Family Resource Centres

Supporting People with Disabilities Across the Province

Autism Alberta’s Family Resource Centres provide a range of services and supports that focus on strengthening parenting and caregiving knowledge, social support, coping and problem-solving skills, access to community supports and resources, improving child and adult development, building resiliency and fostering well-being.

Families will find assistance with:

• Goal setting, planning and implementation of services under a Family Managed Service Agreement through the FSCD and PDD programs
• Connecting with their peer network of other families to share lived experiences and find a local community
• Supporting families and FMS Administrators to find, hire, orientate and provide required training to staff who will work directly with individuals and families
• Resources and workshops

It is an all-Alberta virtual resource centre (also offering direct contact with Family Resource Coordinators in person in Calgary, Lethbridge, Fort McMurray, St. Paul, Crowsnest Pass and Medicine Hat).
 

 
Phone Number: 587-282-1424
Email: FamilyResourceCentres@autismalberta.ca
 

The Many Faces of Therapy and Counseling in Alberta

Kitty Parlby

What is the difference between psychiatrists, psychologists, therapists and counselors? That is a common question I often get asked by autism families. It is quickly followed by questions on how to access them, and options on how to get funding for them. It may be more complex than you think.

Let’s start with the bare basics, but remember to read all the way through for more detail. They are all mental health professionals, but are looking at the issues from different viewpoints and training.

• A psychiatrist is someone who became a medical doctor and went on to specialize in mental health. Because they are an MD, they can prescribe medication. They can evaluate both the mental and the physical causes of mental health issues. They consider causes relating to neurochemistry and biology. They can assess and diagnose mental health challenges. If they have specialized in it, they can diagnose autism. They are registered with the College of Physicians & Surgeons of Alberta. You usually need a referral from your family doctor to see a psychiatrist.

• Psychology is the study of the mind and behaviour. Among other things, psychologists have training in psychological testing, assessment and psychotherapy (talk therapy). They can diagnose mental health conditions. They can diagnose autism if they have specialized in it. Psychologists have a master’s degree in psychology; some also have a doctoral degree. In Alberta they are registered with The College of Alberta Psychologists. Typically you do not need a referral to see a psychologist.

• The terms therapy and counseling seem to get used interchangeably. In general, counseling is for shorter-term issues, like a particular stressor, life change or trauma. Therapy is commonly for recurring or long-term challenges.

Now here are some important details. Some psychiatrists mostly stick to medicinal treatment, but others may offer psychotherapy, as well. Psychologists have training in psychotherapy, but may not specialize in autism. The same goes for any therapist or counselor. When choosing someone to work with yourself or your loved one, consider the professional’s areas of experience and competency. If you can’t question them directly, it is well worth your time to ask the receptionist if you can talk to someone who knows more specific detail about whoever you are considering. Like anyone else, they will have their own passions, strengths and experience. Don’t forget to ask how long the sessions are and how often they need to occur.

Counselors and therapists are currently unregulated professional terms in Alberta. Therefore a wide range of individuals with a variety of education and experience can call themselves counselors or therapists. However, that’s about to change; the Association of Counseling Therapy of Alberta is awaiting Cabinet approval to become a professional regulatory college. This will likely happen in the summer of 2021. Some professionals that may offer counseling or therapy include psychiatrists, social workers, psychologists and psychiatric nurses.

So what do you need? Perhaps you are looking for therapy directly related to autism. In that case, a psychologist or psychiatrist (and a speech or occupational therapist, as needed) might be your best bet. Autism is not a mental health issue, so Alberta Health Services’ Addiction and Mental Health does not provide services for autism. But maybe you need to see someone for many of the associated mental health issues, such as anxiety or depression. Or you may need counseling around things like relationships between siblings or caregiver burnout. Many types of therapy or counseling can be found in other organizations. Remember to find out details about the training and experience of any individual you’re thinking of seeing. Here are a few that you can check out:

• If your family member qualifies for funding with Family Support for Children with Disabilities (FSCD) as a child, or with Persons with Developmental Disabilities (PDD) as an adult, you may get funding for specialized services.

• Alberta Health Services’ Addiction and Mental Health: These services are typically covered by Alberta Health. Start at this link, find your area, and explore what is available.

• Canadian Mental Health Association, Alberta Division: They have many different programs, groups and learning opportunities. To check them out, start at this link (which has contact information, including websites) and find the location closest to you

• Family and Community Support Services (FCSS): Some locations offer counseling/therapy, which may be offered for free, or with a fee for service on a sliding scale based on your income. To get started, this link has a map with all the locations, and when you scroll down, they are listed alphabetically by city/region and include websites.

• McMan Youth, Family and Community Services Association: They have various programs and services throughout the province. To find out what is available near you, start at this link.

• Provincial Family Resource Networks: Want to find out if there are organizations in your area that might provide what you need? This is a great place to search. You’ll find that organizations are listed multiple times; that’s because each individual program is listed, and many organizations have multiple programs.

Let’s talk financial. What if you don’t have funding like FSCD or PDD? Psychiatrists are doctors, so visits with them are covered by Alberta Health. However, psychologists are not covered, unless they work in places like schools, social agencies, hospitals or community clinics. Likewise, therapists and counselors are usually not covered. Some organizations that offer therapy/counseling may offer it free, or on a sliding scale based on your income. Blue Cross also has some plans that partially cover some types of therapy. Other insurance companies may provide some coverage if you have extended health benefits. Also, in some circumstances therapy may be claimed as a medical expense on your tax return (check with the Canada Revenue Agency).

Getting the needed services for autistic adults or children can be challenging to find and expensive, no matter where you live. If you are seeing a professional who is not a good fit, end the sessions and try someone else. Parents have often told me that they are exhausted and burnt out from all the research and advocacy, and just can’t do it anymore. I encourage you to instead think of it as something you may need a break from now, but which you will pick up again once you’ve rested and replenished. Connecting with other families on social media, in groups, or in person may give you fresh ideas and resources, and most of all the encouragement to persevere.
 

Kitty Parlby is the mother of an autistic young adult. She is a former special needs Educational Assistant and an autism speaker and consultant with Autism Inspirations. She currently works as a Family Resource Coordinator for Autism Society Alberta.
 

Remembering the Importance of Medication Firsthand

Hope Rudics

My son started on medication almost two months ago, and we have seen nothing but improvements. He is now more focused on his schoolwork, is in better spirits, has better interactions with his peers (when school is in-person, anyway), and self-regulates with more ease. (See my article on this in a previous AAA newsletter.) 

We have been extremely diligent about having him take his medication at about the same time every day. However, I recently made the mistake of letting my own medication run out before even calling in the refill. Although my medication is for anxiety and his is for ADHD, I now have a bit better understanding of what my son has to struggle with on a daily basis.

When I didn’t take my meds for just seven days, I experienced the polar opposite of all of the positive effects of my son's medication. Work was a struggle, I couldn’t get restful sleep, I was irritable, I was extremely antisocial, and I was once again anxious, all the time. I knew that all of these things were totally out of character for me, and that just made it all feel worse.

My son did not speak until almost five years of age. At the age of seven, he was able to voice to me that his brain made him do things that he knew were bad, and that it was sometimes too much to handle. I was always an advocate for listening to your children, and now I am even more set in that belief. When the psychiatrist suggested medication two years ago, it was a hard no from me. I was extremely hesitant to start my young child on stimulants because I had been conditioned to believe in the stigma of medication. So after you are done listening to your child, listen to the professionals, and as a team you can make the best decision.

Next time I am low on medications, or the next time any of us are low, for that matter, I am calling in the refill and picking it up before the bottle is empty. I have dealt with my anxiety and depression while medication-free for most of my life, but after being on medication and having to experience being off it again, I won’t be missing anyone's medication refill anytime soon. Mental health doesn’t just affect those in our autism community: millions of people struggle with some form of mental health issues worldwide, often in addition to their spectrum diagnosis. As always, be kind and do good things.
 

What Are the Criteria for an ASD Diagnosis?

Nicole Burnett

My son was four years old when his daycare said they were concerned about some of his behaviours. Off to the pediatrician we went! It didn’t take much consultation before the doctor walked back in the room, handed me a pamphlet, and said, “Your son is autistic.” He then walked out of the room. I had no opportunity to ask questions, and was left with some very limited information in my hands. As a psychology professor, I have the privilege of accessing as much information as I want; thus, I wanted to share with other parents, who may have had a similar experience, about what led to the doctor's diagnosis.

The diagnosis of Autism Spectrum Disorder follows the guidelines of the Diagnostic and Statistical Manual of Mental Disorder (DSM-5), which outlines specific behaviours that must be present or absent in the individual. Here is a summary:

Criterion A: The individual must show Impairments in social communication/interactions with others. These behaviours must include all of the following:

1. Difficulties with social reciprocity: The individual does not engage, or engages in a way that is unexpected, in sharing emotions or interests with others; and, does not engage in, or does not respond to, social interactions initiated by other people.

2. Difficulties with non-verbal communication: This refers to lack of eye contact and difficulty understanding gestures and body language in others.

3. Difficulties with making and maintaining social relationships: This means the child has difficulty interacting with peers, making friends, adjusting to a social situation, and sometimes has an absence of interest in peers.

Criterion B: The individual must display a restricted or repetitive pattern of behaviour. There are four types of behaviours listed here, but the individual only needs to display two of them to receive a diagnosis.

1. Stereotyped/repetitive motor movements (e.g. stimming, such as hand flapping or rocking), use of objects (such as lining them up), or use of speech (for example, echolalia).

2. Insistence on sameness, including difficulty with transitions between activities, and the desire to adhere to a strict daily routine. This may also include extreme distress at small changes (such as trying new foods).

3. Fixed/intense interest in a topic/object (for example, being obsessed with Minecraft). This is often also referred to as a “perseverative interest.”

4. Extreme sensitivity to sensory aspects of the environment. This may include avoidance (being oversensitive to things like loud noises, clothing tags, etc.), but also sensory-seeking behaviour (excessive smelling/touching of objects, fascination with a particular texture, etc.)

These criteria are used to diagnose ASD at any point in an individual’s life, and are not restricted to the behaviours of children. As you already know from being involved in the Autism community, there is a great diversity among ASD individuals. Even so, ASD individuals are all gauged by the same metric: the DSM-5 diagnostic criteria. I hope this entry was informative, and next month I will discuss what it means to be a “spectrum” disorder, which should help with understanding where this great diversity comes from.

Nicole Burnett, PhD

Emotions 101: Understanding and Managing Your Emotions

STA is pleased to offer an 8-week psychoeducational group to support adults with ASD to better identify and understand their emotions. Participants in this group will learn about emotions, discover patterns in their own emotional responses, and explore a variety of coping skills.


 

Who is it for?

Adults with ASD ages 18 and up who:

• Can discuss their thoughts, emotions, and experiences
• Are located in the province of Alberta
• Have access to technology that supports video conferencing
• Can commit to attending all eight sessions

Click here to view the group poster
 

Teaching High School Students with Autism Online

Myles Bingham

How one teacher incorporated daily check-ins, virtual field trips, and a cooperative online game to keep students engaged
 

The shift to online learning in spring of 2020 was abrupt, and forced me to rethink how I connect with, and plan for, students. The learning curve was steep for parents, caregivers, students and teachers in terms of how to set up meetings and join pre-arranged spaces. For any students who thrived on the daily routines of getting ready and attending school with their peers, the switch to school via the kitchen table may have been disappointing. Once a schedule was established and we were able to connect, the real challenge became apparent. How could we keep the momentum going with reading and literacy while keeping the students wanting to attend daily?

In the classroom I worked with talented Educational Assistants (EAs) to support student engagement. Knowing students' preferred activities, accessing the school gym, walking outside, or an impromptu art lesson were all strategies we could employ when student interest or energy levels waned. Now working online, I felt we were losing the focus of the students. With the input from my EAs, we instituted a new online structure and schedule that appeared to boost engagement, as well as promote student autonomy.
 

Check-in

In our in-person class routine, we did morning check-ins. We continued this in our transition to online learning. At the start of every session, we worked through the HALT acronym. Originally from Alberta Health Services, this strategy helps staff, caregivers, and students establish an understanding of how the student is presenting in that moment. 

We ask specific questions: Are you HUNGRY (H)? Are you ANGRY (A)? Are you feeling LONELY (L)? Are you feeling TIRED (T)? Students had their own paper copies of HALT, and they could use a “thumbs up” or “green/go” sign to indicate they were ready to learn.

For students who expressed that they required more support in this check-in, we could invite the student and their caregiver to a breakout meeting room, or use the phone to communicate and hopefully identify the obstacles that needed to be addressed. Using consistent language and referencing a visual of HALT empowered students to express their own physiological needs, and then work collaboratively to meet those needs. This also appeared to increase a level of autonomy where students could advocate for themselves and communicate.

(Picture by Reka Serfozo)
 

Virtual Field Trips

Working on stories and graphic novels in the online medium meant that I would often serve as reader, out-loud thinker, predictor, and note taker. The Readtopia program had a free trial of resources, which included videos embedded in graphic novels. I provided each student with their own copy of the text, and I would model previewing and reading strategies that involved putting pen to paper to circle key words. For example, every time we saw a new name in the story, we would highlight it.

To break up this type of work, I sourced video clips that I referred to as “Virtual Field Trips”. After one to two pages of reading, I would then present the video clip to start our trip. These extension videos included a deeper dive into an aspect of the text – for example, an elephant. We would then find an appropriate clip of an elephant, and then discuss the elephant in our story, and what we observed from our field trip about the elephant's size, diet and habitat. I felt that the extra time I took to find appropriate virtual experiences, such as video clips, extended our time on-task, and the students were more engaged throughout the work block.
 

Gaming & Sharing

We also increased student buy-in and attendance with "Choice Time Friday". The game of choice ended up being Ludo King. On the first Choice Time Friday, I presented the game to the students on Google Meet and played against an EA. We modeled how to play, what the prompts from the game were, and how our selections moved our player forward. For games with students, I would start a game and share the code with the students and their caregivers/families. We could play in groups of four, with staff participating in each group.

For students not as interested in playing, they were encouraged to share their hobby, interest or passion. I would support student-led presentations or present media or pictures on their behalf. This recurring Friday event created a sense of anticipation and helped to build our classroom connections, even though we were unable to be in the same physical space. 

The success we had as a group started with the commitment of the parents and caregivers who were the liaison (and tech support) between our classroom team and the students. This collaboration, along with the support of my EAs, allowed for us to strive to make online learning engaging.
 

Myles has a Master’s Degree in Education Psychology with a focus in Special Education. Over the last fifteen years Myles has worked as a classroom teacher in the Edmonton area with teenagers and young adults with Autism, Acquired Brain Injuries, and Learning Disabilities.
 

Estate Planning Series: Part 3 – Qualified Disability Trusts

Nicole Wiebe

Last month in Part 2 of this series, we discussed Henson Trusts and the ability to set up a Henson Trust as an inter vivos trust. In Part 3 of this series, we are going to discuss the Qualified Disability Trust, including the criteria a trust must meet in order to qualify as a Qualified Disability Trust.

Previously, testamentary trusts (trusts set up in a Will) were taxed at graduated rates. Now, testamentary trusts are taxed at the highest marginal rate on income generated in the trust. However, there are two exceptions to this rule that allow for graduated rate taxation: the first is the Graduated Rate Estate (which we will not be discussing in this article), and the second is the Qualified Disability Trust (QDT). The QDT was created in 2016 to benefit individuals with certain disabilities by allowing access to the graduated tax rates that previously applied to testamentary trusts.

The Income Tax Act of Canada, subsection 122(3), sets out the definition of a QDT. In order to be a QDT, a trust must meet the criteria as set out in the Income Tax Act, which includes:

1. At the end of the taxation year, the trust must be a testamentary trust that arose as a consequence of a particular individual’s death: An inter vivos trust does not qualify for a QDT.

2. The trust must be a resident in Canada for the taxation year: The “central management and control” of the trust must be in Canada in order to meet this requirement. This test requires a fact-driven analysis.

3. The trust must make a joint election with a “qualifying beneficiary” to be a QDT:

   1. Ensure an election is filed on time for the taxation year, as there is no relief for late filing.

   2. The Social Insurance Number of the qualifying beneficiary will be required.

4. The qualifying beneficiary must be specifically named as a beneficiary in the trust: General references in the trust to “my children” or “my issue” are not sufficient to meet the QDT criteria. The beneficiary must be specifically named in the testamentary trust in order to benefit from the trust being a QDT.

5. Disability Tax Credit qualification: The qualifying beneficiary must qualify for the Disability Tax Credit for the given taxation year. (We will be discussing the Disability Tax Credit in our next article).

6. There can only be one QDT election per qualifying beneficiary: A qualifying beneficiary that is a beneficiary of multiple testamentary trusts may only choose one trust that can qualify as a QDT.

With respect to point 5 above, keep in mind that if a Henson trust is set up for a disabled beneficiary who does not qualify for the Disability Tax Credit, the Henson trust will still provide a benefit to the beneficiary of the trust, since it can shelter the beneficiaries’ assets from the asset test set out for AISH and other governmental benefits. However, the beneficiary will not be able to elect for the testamentary trust to be a QDT, and the trust would thus be taxed at the highest marginal rate. If the beneficiary later qualifies for the Disability Tax Credit, or if any beneficiary of a testamentary trust later becomes disabled and qualifies for the disability tax credit, the trust may qualify for the QDT designation.

The QDT is a great exception to the taxation rules on testamentary trusts that has been made to assist disabled beneficiaries. However, it is important that you seek professional advice to understand what is required to benefit from a QDT, and what the implications of creating a QDT are. For example, a QDT may be subject to recovery tax in regards to a previous year if it failed to qualify.

As noted in this article, in order for a testamentary trust to be designated as a QDT, the qualifying beneficiary of the trust must qualify for the Disability Tax Credit. Part Four of this estate planning series will cover the Disability Tax Credit, including a discussion of what it is and how an individual can qualify for it.

Nicole Wiebe

Associate, Trusts, Estate, and Wealth Preservation Group at Dentons Canada LLP

For further information regarding the information contained in this article you can reach Nicole at nicole.wiebe@dentons.com.

*Disclaimer – this estate planning series is provided as information only and may include items reported from other sources. The author does not warrant its accuracy. This information is not meant as a legal opinion or advice.
 

Our Virtual Village

Karla Power

When Covid-19 numbers were increasing, our physical connections with others seemed to be decreasing. We went from having friends, to having bubbles, and then only having our immediate family to spend time with. I understand that limiting our contact with others is important, but boy is it hard! Raising kids is tough, and raising kids with extraordinary needs can already feel so isolating.

Speaking of isolating, our family has endured a total of seven isolations so far this year, all caused by myself, Frank or Paddy being a close contact to a positive case at school. For Frank and me, the isolations can be boring and lonely, but we manage.

For Paddy, the isolations are extremely difficult! He does not understand why he cannot go to school or daycare, or even leave the house. He becomes so frustrated and dysregulated that he has begun to bang his feet on the floor. He has been doing it so hard that the pads of his toes are cracked and the knuckles are bruised. It is heartbreaking, and all we can do is try to calm him down with snacks and shows.

Transitioning him back to his regular routine can be very trying, as well. Once he has become accustomed to staying at home with just his family, going back to his school and daycare routines is rather challenging! It seems as though we are starting over with several goals, and he needs about a week to get used to life again, until it comes to a screeching halt once more.

Something that has gotten us through the tough times this year has been to be honest about it and reach out for help, at least virtually. By admitting that we are struggling on social media support groups, I hope that others will feel less alone. I have received so many messages of encouragement and offers of help when we needed them the most. When I was open and honest about our situation, our virtual village stepped up.

It is so nice to know you are not alone when you are struggling. I appreciate all the comments, prayers and offers to drop off goodies. We are all healthy and hope to continue to be so. The fresh air and sunshine have brought us some much needed positivity and we look forward to someday meeting up with our friends and family again in person. For now, I will continue to reach out to our virtual village, as I feel like it takes a village to raise a child, and that need is still there, regardless of the state of the world.
 

Supporting Learning, Interaction, and Interests through Reading

Maureen Bennie

The ability to read can foster greater independence, support mental health, and lead to positive outcomes in adulthood. This is because reading is connected to employment opportunities, which in turn are connected to income and housing. Reading improves self-confidence, increases vocabulary for both internal thought and communication, allows for greater participation in society and the workplace, expands interests, and supports understanding in how to navigate in an environment.

Reading aloud to children every day is one of the most important things you can do to prepare them for learning. More brain development occurs from birth to kindergarten than any other time in life. That’s not to say that people can’t be lifelong learners – we continue to learn new things all the time – it’s just that this early learning period is a rich time for child development. Reading aloud can also be a time to connect with other people, a quiet time away from screens which have dominated our lives since the pandemic began.

University of Waterloo researchers Colin Macleod and Noah Forrin found that speaking text aloud helps to get words into long-term memory. Their study determined that it is the dual action of speaking and hearing oneself that has the most beneficial impact on memory so reading aloud to oneself is also a good thing! (My autistic son reads aloud to himself everyday!)

For the parents of children with Autism Spectrum Disorders (ASD), reading aloud with their children can sometimes be difficult and frustrating because their children may lack the motivation and/or the skills that are necessary to participate in shared reading activities. Parents may be reluctant to read with their children if they have difficulty staying focused or become aggressive during book readings. We’ll look at some ideas to help with these challenges.

Autistic children can have additional problems with reading. Many struggle trying to acquire reading skills through phonemic awareness or a phonics based approach. Difficulties with auditory processing or speech delays/disorders can make reading aloud or retaining information read aloud more of a challenge. Do not despair or give up on reading! I have written about literacy skills in a past blog and how to support struggling readers.

Let’s look at some ways to support the activity of reading aloud, interacting, and different types of books that support both learning and enjoyment.
 

Reading to Young Children

Speech Language Pathologist Teresa Cardon has a great chapter on reading and books in Initiations and Interactions – Early Intervention Techniques for Parents of Children with Autism Spectrum Disorders. Cardon lists the kinds of books to start with made from foam, board, or cloth:

Interactive – books that have buttons, flaps, tabs etc. These are great to enhance sensory experiences. They are great to teach turn taking and provide additional interest. Here is a list of interactive books.

Repetitive – books with repetitive patterns that provide predictability and their rhythmic patterns makes them sound musical.

Special Events – books that are written around a specific event such as the first day of school, a birthday party, birth of a sibling, a holiday, going to the doctor, etc. These types of books can be helpful about preparing for a new experience. If you can’t find a book that suits the experience, you can make your own with photos of the places and people you will see. We used to do that for our son. We made one for haircuts, first day of preschool, and going to the dentist. They really helped lessen the anxiety of new experiences.

Classics – the stories we all grew up with like The Three Little Pigs, Little Red Riding Hood, Corduroy, Goodnight Moon etc. Because these stories will appear in other settings like preschool and kindergarten, access to these will make them familiar. Pretend play and and stage performances often revolve around the classic tales.

Read more (Click the link and scroll down to "Story Time Stages")